JHCPU 25.2 May 2014—Note from the Editor

Two entities loom large in our second issue of 2014: (1) populations whose primary language is not English (especially Spanish-speaking populations in North and Central America and the Caribbean, but also speakers of Asian languages and residents of Senegal and Niger); and (2) health care settings—ranging from hospitals to community health centers to private primary care practices to free clinics to shelters to the street itself.

Theme 1: Linguistically-Identified Populations and Health

Within counties and across countries, languages represent culture in the most deep-seated way possible. Languages serve as markers of cultural identity and, viewed more closely, yield rich information about cultures. Spanish, Chinese, Vietnamese, Korean, and languages spoken in the predominantly Muslim West African nations of Senegal (Wolof, Fula, Serer, French, and others) and Niger (Hausa, Zarma, Fulani, Tuareg, French, and others) all come into the stories told in the articles in this issue, especially Spanish. The authors of the ACU Column, which concerns barriers to contraceptive care faced by low-income and otherwise marginalized women, remind readers of Sankofa—the West African (Akan) symbol representing the importance of examining the lessons of our past in order to reach the full potential of our future. I hope the articles gathered together here contribute to such examinations.

Fundamental to good health care is good communication among patients, staff, and caregivers. Baig and colleagues report from Chicago on a study of the Spanish language ability and cultural awareness of community health center staff and providers working with large numbers of Latino patients with diabetes, and identify specific areas for improvement. Berkowitz and colleagues also assessed the status of Latino patients in the Diabetes Study of Northern California, reporting that low income and low educational attainment are important risk factors for hypoglycemia. In a Report from the Field, Sanchez and colleagues from Texas describe the outcome of an Office of Minority Health meeting on eliminating health disparities through culturally and linguistically integrated care, concluding with the identification of key strategies to achieving this end. Connections between the quality of patient-provider communication among Puerto Ricans, socio-demographic variables, and health status occupy William Calo and colleagues in their Brief Communication. Maranda and colleagues at a community health center in New York City conducted an intervention designed to enhance patient activation and report on signs of its effectiveness among Spanish-speaking patients.

It has previously been found that, in the United States, metropolitan areas with laws prohibiting over-the-counter (OTC) sales of syringes have a higher mean HIV prevalence than other metropolitan areas. Pollini and colleagues examine OTC syringe sales in Tijuana, Mexico, where such sales are legal, by means of a survey of over 200 pharmacies. They report that, despite the legality of the practice, a large majority (74%) of respondents reported that their pharmacy required a prescription for a syringe purchase.

Religion and church teachings positively influence the cancer screening practices of Catholic Latinos in Massachusetts, according to Allen and colleagues from Dana-Farber, Harvard, and Boston College. Participants in the eight focus groups they conducted emphasized that their parish leaders strongly encouraged cancer screening, expressed willingness to participate in health education programs in their parishes, and provided practical recommendations for implementing such health programs.

Forty women living in Guatemala participated in a qualitative study of cervical cancer and HPV knowledge, attitudes, beliefs and behaviors. Petrocy and Katz, who conducted the study, report that while knowledge was low, openness to receiving the vaccine and in getting it for daughters is high. Nguyen and Belgrave report on the interaction of ethnic identification and the effectiveness of a breast and cervical cancer screening intervention among Vietnamese women living in the United States, reporting that higher ethnic identification was associated with less effectiveness. Lee, Choi, and Jung, using the California Health Interview Survey, studied access to health care among three Asian sub-groups (Chinese, Vietnamese, and Korean). While they find that poverty and insurance status commonly impede access to care, there are differences worth noting among the subgroups. First, Koreans had by far the worst access to a regular source of care (45.2%), relative to both Vietnamese (59.8%) and Chinese (78%). Furthermore, poverty status was the only significant predictor of access for Koreans, insurance status the only significant predictor for Vietnamese, and both were significant predictors of access for Chinese.

Pregnancy can be a time of great stress as well as joy. Being a minority group member, especially if one’s group is marginalized, also strains one’s sense of well-being. Finally, being immersed in a new culture, too, provokes anxiety in many people. Fleuriat and Sunil, at the University of Texas at San Antonio, studied pregnant Mexican American and pregnant Mexican immigrant women with respect to subjective social status, perceived social stress, depressive symptoms, and pregnancy-related anxiety. The two groups differed. The Mexican American women had higher levels of depression and perceived social stress. The Mexican immigrant women, in contrast, had higher levels of pregnancy-related anxiety. These findings should be helpful in developing culturally responsive prenatal care and psychosocial support.

Family planning is another phenomenon where cultural factors weigh heavily. Hossain, Ahmed, and Rogers asked whether a woman’s level of education correlated with the level of spousal agreement about family planning in the predominantly Muslim countries of Senegal and Niger. They found a strong effect: the level of spousal agreement was approximately three times as high in couples where the wife had more than primary education than in couples where she had less. Improvement in women’s education, the authors conclude, could contribute to greater success in women’s family planning.

Theme 2: Health Care Settings

As health policy and practice evolves in response to advances in knowledge and understanding, the force fields of economics and law, and perpetual diversification of social groups, so too the places where practitioners and patients meet evolve. The rest of this note is organized according to site of care.

Hospitals. Two Reports from the Field and five Original Papers concern care received in hospitals or after hospitalization. The Report by Roose and colleagues from Albert Einstein College of Medicine in the Bronx is about an innovative peer educator program to reduce barriers to hepatitis C treatment among opioid drug users. The second Report concerns medical education: Malika Sharma describes a new curriculum on marginalization and health at an inner-city academic hospital in Toronto.

Sabrina Assoumou and colleagues at the Boston University School of Medicine also seek to improve hepatitis C virus treatment, and rigorously studied the slowly increasing adequacy of treatment between 2005 and 2011 at an urban safety-net hospital. Post-hospital care presents another challenge, especially for older patients of low socioeconomic status. A Philadelphia-based team led by Shreya Kangovi found that socioeconomic stressors (that make accessing post-discharge care and accommodations difficult) and a felt lack of empathy among people to whom they looked for help made the transition more difficult for the participants in their study.

Two papers concern emergency room (ER) use. Mahabee-Gittens and her Cincinnati-based team incorporated a brief, parental tobacco prevention intervention to parents of pediatric patients in an ER, many of whom had low incomes and/or were African Americans and nearly 30% of whom smoked. The parents reported finding the intervention helpful and easy to understand, and that it did not interfere wither their children’s care. Using Medical Expenditure Panel Survey (MEPS) data, Karoline Mortensen analyzed the relationship between Medicaid enrollees’ access to primary care providers and their use of ERs, finding that increasingly poor access to primary care correlated with increased ER use. The author points out that this underscores again the importance of shoring up the availability of primary care providers taking new Medicaid patients as the ACA goes into broad effect. Finally a Texas team led by Bryan Schneider developed and applied a system for prioritizing the need for inpatient. hospital services among prisoners. Nearly all the inpatient admissions they studied (94%) ranked as medically mandatory or medically necessary—in other words, the services must be given and therefore funding for them must be budgeted by states. The mechanism the team developed for prioritizing cases may be helpful to state policymakers nationwide.

Community health centers. A Commentary by Isringhausen and colleagues at Virginia Commonwealth University recommends establishing formal partnerships between community health centers and nearby dental schools in order to increase the amount of oral health care available to low-income patients. They geocoded dental school and federally qualified health center (FQHC) sites in the continental U.S. and found that on average dental schools are within 10 miles of 34 FQHC sites. Women, Infants and Children (WIC) program sites are another sort of health center. Donna Lockner and her team report on a random-control design study of an intervention to promote skills training, tools, and a wellness program for staff at the 48 WIC clinics in New Mexico, with the goal of improving staff members’ own conceptions of their physical selves and their functioning. The staff who participated in the Get Healthy Together program reported improved confidence and ability to counsel the parents of overweight children. Unusually, this intervention appeared to have beneficial effects for three affected populations: WIC staff, WIC parents, and WIC children.

The federal service program, AmeriCorps, sometimes provides staff to CHCs to assist with case management. Stipelman and her Utah-based team compared the rates of Medicaid/CHIP insurance at an urban FQHC that had AmeriCorps staff providing case management with those at a similar FQHC that did not have AmeriCorps staffing. (Both clinics predominantly serve Latino populations.) Nearly three-fourths (74%) of the children at the AmeriCorps-staffed clinic were enrolled in health insurance whereas only 26% of those at the non-AmeriCorps-staffed clinic were. Furthermore, the children at the former clinic were more likely to receive preventive care, despite sliding-scale billing at both clinics. Consumer governance of some sort (“maximum feasible participation”) has been a feature of CHCs since they were first established in 1965 as part of President Lyndon Johnson’s War on Poverty. Wright and Martin explored by means of extended interviews with 30 trustees in 14 states the role of consumer trustees in decision-making at CHCs. In general, they reported that the CHC boards on which they sit do influence the decisions about how margin and mission are balanced, but that executive directors and clinic staff exert more influence.

Free clinics and student-run clinics. Four papers in this issue concern themselves with free clinics or student-run free clinics. Petrany and Christiansen used a pre-test/post-test design to evaluate knowledge of the ACA among 100 uninsured patients at a free clinic in West Virginia. Knowledge was low on the pre-test, relative to national averages, but improved markedly after the video. Another Utah-based paper, by Kamimura and colleagues, finds high prevalence of intimate partner violence (IPV) among people visiting a free clinic, and also found that IPV in this population is associated with poor health outcomes (especially mental health).  In another paper bearing on medical education, Smith and others from the University of California at San Diego School of Medicine surveyed nearly 1,000 people who had taken the 1st or 2nd year service-learning course in which they worked at the student-run free clinic project there between the years of 2001-2010.  The response rate was very high, as were the reported effects on reported knowledge, skills, attitudes and self-efficacy with the underserved, interest in primary care, and interest in working with the underserved.

Finally, Peluso and a team from Yale’s School of Medicine report of the successful management of latent tuberculosis infection in a low-income, largely non-U.S.-born population at the HAVEN Free Clinic. They achieved results comparable to the most successful programs reported on in the literature. This is important as the threat of latent tuberculosis infection is severe, and the course of treatment long (nine months) and not motivated by symptoms. It is also important that the authors report on the death of a program participant: the patient developed INH toxicity and was seen at Yale-New Haven Hospital; while there, she underwent a diagnostic procedure on her liver, developed complications, and died. Her death was publicized when it happened, and became the subject of a self-study conference at Yale; it was not a result of her care at the HAVEN Free Clinic.

Other settings. A team led by Sarah Woods investigated the incidence of family discord among patients (N=125) at an urban primary care practice and associated psychiatric co morbidities, reporting it to be very high. In another paper bringing together researchers from Yale and the University of Utah, Echo Warner and colleagues studied the health care concerns of rural people who had survived childhood cancer. The survivors frequently expressed concerns about what care was available to them locally, but also expressed willingness to travel long distances to get better care. Studying data from the Behavioral Risk Factor Surveillance System (BRFSS), Okoro, Dhingra, and Li found that adults with disabilities who suffered psychological distress also had higher prevalence of chronic conditions, barriers to health care, and non-receipt of preventive cancer screenings.

Two papers set in the New York-New Jersey area concern urban children with asthma. Rastogi’s team from Albert Einstein College of Medicine found that the quality of life among obese asthmatic children did not differ from that of pre-adolescent inner-city children (some with asthma, some who were obese but not asthmatic, and some who were neither obese nor asthmatic). The authors conclude that asthma severity may not serve as a surrogate marker of quality of life. Cutuli and colleagues examined rates of asthma among children staying in family emergency shelters and how it related to adaptive functioning and health care use.  The rate of asthma among 4-6 year olds was 21%, approximately double state and national averages. The children with asthma had worse peer relationships and used more health services than other children; they did not differ on academic, cognitive, and school behavioral measures.

Sara Kennedy led a team that qualitatively studied pregnancy intention and the use of contraception among homeless women with children. The 22 women interviewed expressed a strong preference not to become pregnant while homeless, but also cited competing demands as depressing their care of their own health, structural barriers (shelter and health system) to contraception, and decreased power in sexual relationships when homeless. Jack Tsai’s team based at a Veterans Affairs (VA) research center and Yale University studied the characteristics of homeless individuals seen at the VA after being engaged through street outreach. In 2011-2012, nearly 71,000 literally homeless veterans engaged in VA homeless services and 12% of them were engaged through street outreach. This sub-group was characterized by more chronic homelessness and was more likely than the rest to be referred and admitted to the VA’s supported housing program. The authors conclude by underscoring the importance of street outreach for serving those people who are homeless most direly in need of care.

Finishing this summary, I am again brought up sharply to recognize that the medical, dental, and mental health care needs of often disempowered people compel our attention. The work of the researchers, clinicians, and community leaders that we see here should help light the way to a place where those needs are met.

Virginia M. Brennan, PhD, MA
Editor, JHCPU
Assoc. Professor, Meharry Medical College

Perspectives of Older Adults of Low Socioeconomic Status on the Post-hospital Transition

References: 45
Tables: 1
Figures: 0

1. Shreya Kangovi, MD1,2,3,4
1233 Blockley Hall
423 Guardian Drive
Philadelphia, PA 19104
215-520-5309 (c)
215-573-2742 (f)
(Corresponding author)

2. Kathryn Levy3

3. Frances K. Barg, PhD5, MEd
3620 Hamilton Walk
Philadelphia, PA 19104
Office: 215-746-1830
Fax: 215-662-3591

4. Tamala Carter5

5. Judith A. Long, MD1,3,4,6 ,
1201 Blockley Hall
423 Guardian Drive
Philadelphia, PA 19104

6. David Grande, MD, MPA3,4
3641 Locust Walk
Colonial Penn Center 407
Philadelphia, PA 19104

1. Philadelphia Veterans Affairs Medical Center, Philadelphia, PA
2. Robert Wood Johnson Foundation Clinical Scholars Program. University of Pennsylvania, Philadelphia, PA.
3. Department of Medicine, University of Pennsylvania Perelman School of Medicine, Philadelphia, PA.
4. Leonard Davis Institute of Health Economics. University of Pennsylvania, Philadelphia, PA.
5. Department of Family Medicine and Community Health, University of Pennsylvania Perelman School of Medicine, Philadelphia, PA
6. Philadelphia VA Center for Health Equities Research and Promotion, Philadelphia, PA.

Abstract: Background. Older adults of low socioeconomic status are at high risk for poor post-hospital outcomes. Design. A qualitative researcher, who was also an outreach worker from the West Philadelphia community, conducted in-depth interviews with 25 participants within 30 days of their hospital discharge. Participants. Eligible participants were: 1) residents of high-poverty ZIP codes; 2) dually eligible for Medicare and Medicaid; 3) had capacity or a caregiver who could be interviewed as a proxy; 4) general medicine or cardiology patients. Results. Participants were unable to access the care and accommodations needed to cope with post-hospital frailty. As a result, medical disability was amplified by socioeconomic disability. Participants were ashamed of the resulting loss of control and had difficulty asking for help, particularly from potential supports who were perceived as emotionally controlling or judgmental. Conclusion. Strategies that address socioeconomic stressors of hospitalization and provide empathic support may improve the post-hospital transition for these high-risk individuals.

Key words: Low socioeconomic status, dually-eligible individuals, post-hospital transition, disparities.

Improving the post-hospital transition for older adults has become an important national health policy focus. Acute illness, the stressors of hospitalization and the challenges of recovery place older adults at risk for precipitous decline in health status after hospitalization.1-5 Over the past 20 years, this pattern of post-hospital vulnerability has received several labels including “the cascade to dependency,”1 “the dysfunction syndrome,”6 and most recently “the post-hospital syndrome.”3 Several studies examining the perspectives of hospitalized older adults and their caregivers7-19 have revealed consistent themes regarding possible mechanisms underlying post-hospital vulnerability. First, older patients and caregivers feel a sense of powerlessness during acute illness that is heightened when they are excluded from discussions of their care plan.16,18 Second, they are often unprepared for the realities of self-care after discharge,8,13 particularly in light of functional declines resulting from the physiologic stressors of illness and hospital care.20 Third, they describe poor care coordination17 and an inability to access appropriate health care providers after discharge.9,11 These studies have led to the development of interventions6,21,22 and policies23,24 designed to improve hospitalization and the post-hospital transition for older adults.
Older adults of low socioeconomic status (SES), who are typically dually eligible for Medicare and Medicaid, have significantly higher risk of poor post-hospital outcomes than their high-SES counterparts including an elevated risk of readmission and mortality across diseases.25-33 However, few studies have explored care transitions from the perspective of these patients. As a result, with few exceptions,34 current interventions may not be designed for low-SES patients with the greatest need of support. This may explain the relatively low rates of uptake for post-discharge services among low-SES older adults.35
Our objective was to address this gap in knowledge by exploring the perspectives of low-SES, dually-eligible patients on hospitalization and the post-hospital transition.

Study design and participants. We conducted in-depth qualitative interviews with 25 participants between January of 2011 and November of 2012. This study was approved by the Institutional Review Board of the University of Pennsylvania. Eligible participants were: 1) dually eligible for Medicare and Medicaid; 2) able to score 23 or above on the Mini-Mental Status Examination (MMSE) or had a caregiver who could be interviewed as a proxy; 3) hospitalized on the general medicine or cardiology services of two academically affiliated Philadelphia hospitals (these services were selected because of their high rates of hospital readmission nationally36); 4) residents of a five-ZIP code region of West and Southwest Philadelphia in which greater than 30% of residents live below the federal poverty level. Neighborhoods in this region have a largely Black racial composition and are characterized by high rates of chronic diseases such as asthma, obesity, and hypertension.37 These neighborhoods are designated as medically underserved and have shortages of dental but not primary or mental health care professionals.38

Data collection. Interviews were conducted by one of the authors who is a trained qualitative interviewer, a longtime resident of West Philadelphia and an experienced community outreach worker. The interviewer approached eligible participants or their caregivers while they were hospitalized in order to obtain consent and conducted in-person interviews within 30 days after index hospitalization.

Our open-ended, semi-structured interview guide was based on the Integrative Behavior Model (IBM)39 which is a theoretical framework for understanding health behavior and outcomes. Our guide explored facilitators and barriers to a successful post-hospital transition. Interviews were audio-taped, transcribed, and imported into NVivo 1040 for coding and analysis.

Analysis. We used a modified grounded theory41 approach to analysis. We began by conducting a close reading of transcripts to identify common and interesting themes. We created a coding structure that included emerging ideas as well as a set of a priori codes based on our need to identify facilitators and barriers to a successful post-hospital transition. We refined this coding structure through the constant comparison method,42 an iterative process of interviewing, coding, and analysis.

Two trained research assistants coded each transcript. During coding meetings, the study team identified codes for which the inter-rater reliability (IRR) was below 70% and resolved discrepancies by consensus. The final IRR between the two coders was 93%. We continued to conduct interviews until we reached thematic saturation where no new concepts emerged from the transcripts.

Eighty-five eligible participants were approached during hospitalization for participation. Reasons for refusal to consent included: not being interested (n=14); lacking capacity with no caregiver who could be interviewed as a proxy (n=10); being too busy (n=10) or sick (n=6); having privacy concerns (n=1) or other (n=11) such as being hearing-impaired. Thirty-three participants provided written consent; however, eight were unable to schedule a mutually convenient time for the interview. Characteristics of the 25 study participants are described in Table 1. The most common diagnostic categories were circulatory (24%) and ill-defined conditions such as dizziness (29%). Fifty-two percent of participants were male and the majority (96%) were of Black race.

Many participants echoed themes endorsed by other older adults in the literature with regard to their experience of hospitalization and discharge: powerlessness when excluded from care plans, frustration with uncoordinated post-discharge care, and lack of preparedness for self-care in light of residual symptoms and frailty. Participants also raised several new themes. Participants interpreted post-hospital frailty as a confirmation of gradual age-related decline. Many were unable to access the care and accommodations needed to cope with their post-hospital frailty due to insurance barriers and socioeconomic constraints. This combination of post-hospital medical and socioeconomic disability led to a profound loss of control, to which participants reacted with feelings of low self-worth. In this vulnerable state, participants had to decide whether to admit their limitations and ask for help. Participants who perceived being controlled or judged by people offering support had difficulty accepting help and grew isolated. In contrast, participants who felt empathy and acceptance from supports were able to overcome their own self-judgment and receive help. Participants suggested that hospitals designate a post-discharge support person to whom they could relate.

The case of Ms. B, a 76 year-old woman with a history of diabetes, hypertension, and worsening orthostatic dizziness who presented to the hospital after a fall, is particularly illustrative of these key themes:

When I was discharged I couldn’t go back to my daily life…I couldn’t go out the house or up and down the steps by myself. It made me realize: the fact is that I can’t function as I used to. Now, somebody has to pick me up and somebody else to come back. It’s $4.00 a trip. I’m on a fixed income. How I’m supposed to do that? I just stay home.

I received a bill from the fall that said I had a $700 co-pay after that. That’s exactly the way they said it. Co-pay. I called my insurance company, an HMO. Each one of them said, well you call this other one and you say this, that and the other. After two hours, it’s just crazy. You get confused.

I sat the other day and counted up everything I have that I owe from my co-pays, transportation and medical expenses. I far exceeded—I’m like, maybe $300-400 over my total income. When I pay all my bills and stuff, I didn’t add in one penny for food. I lost my teeth when I fell and have to figure out where I was going to come up with the money to buy new teeth because my insurance don’t pay but a third of what they would cost.

I used to be athletic, I bowled and everything. I can’t do that now. I’m just—it seems like I’m a bother, a burden to everybody because you have to get everybody to do things for you that you usually would be able to do for yourself.

People like you make it easy to talk to. Others think they better than me, and that’s bad. There was one nurse like that after my last hospitalization that I’ve told point blank, I don’t ever want to see you again. Even though I had four drains, a ton of dressing, about five open lesions, open wounds. They tried to call me five times and I didn’t answer the phone. (P1)

In the following sections, we explore the themes that emerged from this and the twenty-four other patients we interviewed.

Post-hospital frailty punctuating age-related decline. Most participants described post-hospital frailty that they saw as a confirmation of age-related decline: “Well, to be discharged from the hospital you realize…the time is ticking, the clock is running…[you] realize your mortality.” (P2) Participants struggled to tease out the effects of aging and post-hospital frailty. One patient hospitalized for falls explained, “I don’t know if that [wobbliness] come from this sickness or just from old age. But anyway, I’m on a walker right now and I’ll probably be on a walker forever.” (P3) One caregiver explained, “He already knew he was getting older, but has been very down since the hospitalization. You know, if you go through a trauma—many times, just being in the hospital is a trauma.” (P4)

Post-hospital medical and socioeconomic frailty. Participants described being further demoralized by facing socioeconomic stressors after hospitalization. Despite dual coverage, several participants (such as Ms. B) had difficulty paying for hospital bills due to temporal gaps in insurance coverage or limitations on Medicaid coverage of Medicare out-of-pocket expenses. For many, this caused frustration directed at insurance companies: “I have health insurance because I worked all my life and paid taxes. Then when you get sick, all the sudden it’s a big issue.”(P2) A few participants described being “lured” into Medicare Advantage plans marketed at senior centers—responding to strategies such as free food give-aways—and later being unhappy with the terms: “They tell you one thing when you join and once you get sick [and need to be hospitalized] you have to pay more than what they said. And you trying to do the right thing and you’re angry.”(P5)

In addition, many participants were unable to afford care and accommodations (such as disability housing, transportation, and food) that might have helped them to compensate for post-hospital frailty. As a result, their new medical disabilities were compounded by socioeconomic constraints. A patient hospitalized for falls explained, “I’m trying to get something on a one level. Every time I call [the housing authority] they say I am on the waiting list. This has been for three years now. There are times when I did fall down the stairs (P6).” Many participants, such as Ms. B, described feeling trapped and unable to get to appointments because they were too frail for public transportation and did not own a car. Others could not afford the types of food recommended during recovery: “[The hospital bills] went up so now you’re only going to eat a can of beans instead of some nice wild rice because it’s the only thing you can afford. So, it’s a form of attrition. You’ll eat [the wrong food], get sick, and then you have to go the hospital. Then health care [costs] goes up.” (P2)

Loss of control leads to low self-worth. Faced with the realities of aging, post-hospital frailty and socioeconomic constraints, participants had a heightened sense of disability. “That last hospitalization really shocked me. I could not do things around the house…I hired someone to help but they wanted way more than I could pay…I feel helpless.”(P11) Participants described the loss of control that came with their disability: “It’s hard when you used to being independent and then all the sudden you’ve got to make 19 phone calls and it’s around somebody else’s time who could come and get you.” (P1) Many participants reacted to this vulnerable state with feelings of low self-worth. A retired manual laborer explained, “Everything I learn how to do, I figured with my hands. I can’t use my hands like that no more. I have to admit to myself that I failed that.” (P5)

Factors that influence the decision to accept help. Participants saw their disability through the lens of having to ask for help. “I get depressed once in a while… I’m a nurse myself and when you start being like now a nurse has to come out to [help me] it seems like, boy your life is over.” (P7) The difficulty of asking for help was increased because patients were reluctant to burden social supports who were themselves poor and often ill.

Like Ms. B, several participants had difficulty asking for help from people who might help them who were perceived as emotionally controlling or judgmental. One caregiver explained, “My brother kind of tries to boss him around and he already doesn’t feel in control. So he doesn’t ask him for help.” (P8) She explained that her father refused home care because “he kind of thought they were trying to take over and just be nosy.” (P8) Another patient explained, “I could tell [my home care nurse] was not comfortable with me or my living situation so after a while I just asked her not to come out.” (P9) One patient summarized: “I won’t even ask [the nursing home staff]. They’re not empathic enough to realize that elderly people are scared because a lot of them get sick to the point that they’re dying.” (P2) Caregivers explained that when participants refused to accept limitations and receive help, they became increasingly isolated. “He was trying to keep his pride…So, he isolates more.” (P4) The result of social isolation appeared to be worsening functional decline, and for patients like Ms. B, relapse of illness and hospital readmission.

Participants did provide some examples of positive connections with supports that allowed them to overcome emotional barriers to asking for help, however. After her most recent hospital admission, Ms. B describes making a connection with her new home care nurse: “I started talking to her and I just broke down and cried. Because usually it’s people who come and talk to me. Now here I sit with nothing. I can’t go do something for somebody else. And, everybody has to do for me. She never ever made me feel like I was bad. She said, ‘I know how you feel but that’s okay we can work on it.’” (P1) Another caregiver explained how she finally managed to break through with a patient who had refused help in the past: “I try to be there for him as a friend, because I know something about memory loss. You know, not to go away from him but to join in with him so that he can keep his mind up and keep some dignity.” (P4)

Suggestions for improving the post-hospital transition. Many participants suggested that hospitals provide some support to cope with post-hospital frailty after discharge. “They need somebody to give them that boost after they come out. Because a lot of people be like, oh, she’s out, she can do for herself now. No, you can’t.” (P10) Participants thought post-discharge support would be most useful if it came from someone whom they trusted and to whom they could relate. “The [aide] they was gonna pair me up with … I didn’t like it only because you don’t know what I’m going through… Now it would be great for a person to come up to me that can say I’ve been there, I’m doing it, I’ve living it.”(P11)

This study revealed key themes in the perceptions of older, low-SES individuals on the post-hospital transition. Participants left the hospital with an acute sense of their age-related decline and mortality. They struggled with residual symptoms and post-hospital medical frailty. In addition, participants faced new financial stressors: they often could not pay hospital bills or afford care and accommodations for their new conditions. As a result, post-hospital frailty was amplified by socioeconomic constraints, leading to a compounded sense of disability. Participants were ashamed of the resulting loss of control and had difficulty asking for help, particularly from potential supports who were perceived as controlling or judgmental. Patients suggested that support from empathic individuals would allow them to overcome their shame and accept help.

Our study relates to prior work describing the “post-hospital syndrome.” However, this label typically describes the effects of physiologic stressors inherent to aging and hospitalization. Our findings raise the possibility that the socioeconomic stressors of hospitalization and recovery may be as important to low SES older adults as physiologic stressors such as sleep deprivation. Participants described three inter-related challenges—age-related decline, post-hospital frailty, and socioeconomic constraints—that each amplified the other, leading to loss of control and low self-worth. We interpret these findings in the context of the life-span theory of control,43 which models pivotal life events and processes as those that increase, decrease, or threaten existing levels of control. Prior studies have confirmed that older adults experience both loss and shame when they are faced with acute events that increase dependency and punctuate their gradual age-related decline.44 Our findings suggest that social and health care supports who exhibit a high degree of empathy may mediate the process by which patients overcome the feelings of low self-worth associated with increasing dependency, and learn to accept help with recovery.

This study informs next steps for policy efforts designed to improve the post-hospital transition for older low-SES adults. First, hospitals might anticipate and alleviate some financial stress by assessing cost of therapies and post-hospital care as part of the routine discharge planning process. Existing discharge bundles such as Project BOOST’s Ideal Discharge for the Elderly Patient: A Hospitalist Checklist might easily be modified to include such planning steps.45 Second, post-hospital follow-up care must address not only medical, but socioeconomic post-hospital syndrome in order to promote successful recovery. The Geriatric Resources for Assessment and Care of Elders (GRACE) model is an example of this type of comprehensive care, which may explain why it was successful in reducing rates of hospitalization among high risk patients.46 Third, participants’ reluctance to accept help from people perceived as being emotionally controlling or judgmental may help explain low rates of uptake for traditional post-discharge services among low-SES older adults.35 Community health workers (CHWs)—trained laypeople who share race, socioeconomic status, and life circumstance with their clients—have high levels of “empathic understanding” and may be well-suited to offer post-discharge support to low-SES older adults.47

This study has several limitations. It is a qualitative study and therefore designed to generate hypotheses, rather than test them. Further, we cannot quantify the prevalence of challenges identified by participants in our study. However, due to the lack of existing data on perspectives of dually-eligible participants on post-hospital transition, we felt that it was important to take an open-ended approach. Second, results from this single-center study may not be generalizable beyond a predominantly African American urban population. We did not specifically ask patients about their experiences of racial bias in their interaction with providers, which may have played a role in their perceptions of hospital care or post-hospital supports. Finally, we are unable to conclude that our findings are unique to low-SES older adults because we did not interview higher-SES participants for comparison. However, we interpret our findings in the context of the results from several studies of older adults in general.

In conclusion, we present the perspectives of older low-SES individuals on the post-hospital transition. Hospital leaders who are interested in improving outcomes for older adults must recognize the socioeconomic stressors that compound the post-hospital vulnerability of dually-eligible individuals. Providing post-hospital support to these participants in a non-judgmental, empathic manner may allow them to overcome the distress of admitting frailty and seeking help during a high-risk time in their lives.

This study was supported by the Leonard Davis Institute for Health Economics at the University of Pennsylvania.


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